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With so many organizations and foundations helping CDH families there are so many great resources! See our post about the members of ACDHO for a list of groups that are truly helping CDH families.

Starting a non-profit is very hard work! We’ve seen a lot come and go over the years and unfortunately we’ve seen a couple with not so great reasons for starting and they ended up hurting more people than helping them. Starting a non-profit is not a decision to take lightly – it’s a great responsibility and should be embarked upon with only the purest of intentions and a lot of research.

The following article is one of the most candid, realistic and helpful articles on non-profits that I have read in my 14 yrs in this field. We are getting a lot of interest in starting new foundations and organizations for many different services (yeah!!!) and I thought I’d post this article for everyone.

Take the first question below, “What is the purpose of your nonprofit?” (It is really not
yours, you know; it belongs to the board and the community, not an individual) Your
answer may be to save whales, to overcome AIDS, to work with troubled youth or to
have a community development corporation. Go beyond those answers. Review and
work on the rest of the questions and come back to the first one and see if you have some
additional purposes or reasons for starting a nonprofit. Put your answers down on paper.

1. Are you being HONEST with YOURSELF? What do you want out of this
for yourself? What is it in your character development that makes you the
one to do this? What do you stand for ethically? Are you looking for a job
or control or an organization that will be active the day after you die? Will
you be honest with others and up front about what you are looking for? Do
you have personal knowledge and/or experience with details, budgeting,
managing people and leadership? What are your personal strengths and
personal weaknesses and will you talk about them with others to make this
organization happen? Are you an ethical person?

2. What is the purpose of your nonprofit? Why are YOU starting a
nonprofit? Why are you starting THIS nonprofit? What is your vision,
your mission? Describe the opportunities that are available.

3. Can you partner or join with another nonprofit organization performing
the same or similar mission without incorporating another group? How
will you avoid duplication of mission, services and work?

4. What are your qualifications and experience to open and operate this
nonprofit business?

5. What kinds of activities will the nonprofit involve or sponsor? Who will
be responsible for these activities? When will they be accomplished? How
will you KNOW they were successful?

6. Will you be providing a service? Will that service be limited to certain
customers/clients/others? Who? How? Why? When? By whom? What
will be the proximity of your office and service to your
customers/clients/others?

7. Will you have membership? If so, who will be eligible and what duties,
obligations, authority and dues will members have?

8. What will be the name of your organization? Have you reserved that
name with the State?

9. Where will you be opening and operating this nonprofit? Do you intend to
use property you or a family member owns?

10. Who will you have on your board of trustees? Will they and other people
provide money and assistance? Why will you have them on the board?
What part will they have in decision-making? What part will they play in
the organization? Please note that some states call the board “trustees” and
some call them “directors”. Be consistent with your state. Your state law
may also list the required officers.

11. What are the advantages and disadvantages to incorporating THIS
organization? Make two columns and list both advantages and the
opportunity and the disadvantages and risks. Talk to others who are
working with you to add to both lists. Do the advantages outweigh the
disadvantages?

12. What are your resources? What are your talents, experience or education
to operate this organization? Will the board contribute financially to the
organization annually?

13. Will you have paid staff and personnel? Will you have volunteers? What
are their responsibilities and authority? What roles will they play in the
organization? What are the responsibilities of the organization to its employees and volunteers? Who will handle those responsibilities? What
written policies, procedures and forms will be required?

14. What is your experience in managing a nonprofit organization or other
endeavor? How good are you in writing and maintaining records, policies,
procedures and forms? Do you know what reporting you will have to do,
when and with whom?

16. Do you own equipment or other forms of property? Do you plan on
acquiring property and equipment? Will you purchase or lease the
equipment and property? How will you acquire these resources? How
will you pay for renovations, furniture, equipment and signs at an office?
How will you pay for the continuing maintenance and improvements?

17. How and where will you keep supplies, stock and inventory?

18. What are your financial needs? Does the organization have a bank
account? What are your financial skills? What kind of grants or funds will
you need? How much money will you need to begin to open this
organization and sustain it – for 1 to 6 to 12 months, or for three years?
Where will that money come from? How will you assure fiscal integrity?

19. What potential liability and risks does this nonprofit have? What insurance
protection will you need? How will risk management assessed and be
handled?

20. Have you received any training, education or technical assistance to
operate a nonprofit business? If you have not received any training,
education or technical assistance, will you need that kind of help? Where
will you find that help? How will you pay for it?

21. Have you developed a business plan? Do you know what a business plan
is and why you need one?

22. How will you keep financial records and other important records such as
contracts, orders, wage payments, vouchers, bills of lading, bank accounts,
tax information, personnel records, annual reports, audits and so on?

23. Are there other nonprofits or for-profit groups – competition – like yours in
the community where you will open? How and why is your nonprofit
different than they are?

24. What are the major impediments for you to start this organization? What
are the barriers? How will you overcome these impediments and barriers?

25.How will you advertise or market the nonprofit’s service? How will you
get customers/clients/supporters? What will be your niche or specialty in
the community you serve, the market place?

26. Have you or other members of your family and friends operated a business
or another nonprofit? Will they help you in this enterprise? What will
that help be? Are you aware of rules on conflict of interest and
intermediate sanctions?

27. Does your group plan on dissolving after a period of time or is it a long-
range project?

28. Do you believe the organization will be involved with lobbying, advocacy
and/or political activities?
Do you have the right stuff to create, maintain and sustain this dream?

REASONS NOT TO INCORPORATE A NONPROFIT ORGANIZATION

This is the start of the questions. Jot down your answers as you read this and the next
several sections.

1. You do not have a group of people who share your mission, passion and sense of
vision who will work with you to create this nonprofit tax exempt organization.

2. You are not sure whether other people will work with you on the project.

3. You left a similar organization and you want to compete with them.

4. You really do not know how much work it will take to incorporate in the State
and file with the Internal Revenue Service.

5. You do not expect to raise money or seek grants, at least no more than two to
three thousand dollars a year.

6. You are not sure what kind of work goes into operating a nonprofit corporation
after it is incorporated and recognized by the State as a nonprofit organization and
by the IRS as a tax exempt organization.

7. You know there is a need for this service but you have not documented the need
and do not know how to go about assessing and meeting the need.

8. You believe it is easy to incorporate a nonprofit tax exempt organization.

9. You believe it is easy to operate, sustain and maintain a nonprofit organization.

10. You believe it will be easy to raise the money to accomplish your goals and
objectives.

11. You like to be independent.

12. You have a great idea, this is a great opportunity and you are concerned that other
people who become involved will change the programs and activities you want.

13. You and your family want to control the organization so that it will be run right.

14. You want to be the chief executive officer such as the executive director for a
salary and sit on the board as chairperson.

15. You are going to aggressively seek grants because it is easy.
Please rethink why you want to start a nonprofit. There are many great reasons and
motivations but those are not among them. Nonprofits as with for-profit businesses can
fail. The reasons listed above will help you along the path to failure. Nonprofits can fail
when they are not mission-driven with a business-sense but driven by some other force.

Our first priority are CDH families and they deserve accurate information so that they can make the best decisions for their cherubs. We first published our Parent Reference Guide in 1996, giving parents a list of commonly used medical terminology and what it all means in layman’s terms. Advice from other parents on pumping breast milk or planning a funeral. Songs to play for a baby in the NICU. Information from recent CDH studies. Diagrams of CDH. Correct CDH statistics. An article about CDH written specifically for CHERUBS by a well-respected pediatric surgeon, our Vice-President Lesli Taylor, MD. We make sure that they know infection and pneumonia cost more cherubs’ lives than poor lung function. All of these things for them. Not to sensationalize CDH or gain attention for CHERUBS. But correct information for CDH families.

We give information and support to families. Offering support services since 1995. We created the world’s first CDH web site, chat room, listserv, forums, blogs, newsletter and conference. Families are no longer alone dealing with CDH since 1995. We are proud of the fact that because our group has been so successful, several other CDH groups have spawned from our membership and follow in CHERUBS footsteps. There can never be too much support for CDH families!

Not only do we support CDH families, but we also support other CDH organizations. We have worked with En Stitching Hernia Diafragmatica, Holland’s CDH group, for 10 years. Onno has attended one of our conferences and we enjoyed spending several days with him, hanging out and exploring Disney World after conference hours. CHERUBS Australia and CHERUBS UK now have non-profit status in their respective countries – with our blessing and the sharing of our knowledge. We work with the French and Italian CDH groups. We are strong supporters of Kays Kids, Rainbow of Hope, the Olivia Raine Foundation, Jack Ryan Gillham Foundation and Little Lambs. We worked with many of these organizations to collectively look out for CDH families best interests and fight the Congenital Diaphragmatic Hernia Awareness Trademark so that all CDH families can continue to raise awareness without fear. CHERUBS is very, very proud to be a member of the Alliance of Congenital Diaphragmatic Hernia Organizations which not only includes many CDH support groups but top CDH hospitals and researchers as well – all of us working together to help CDH families.

Our second priority has always been advocacy and awareness and this is reflected in our interviews in over 100 newspaper articles, interviews for television shows such as 20/20, interviews for magazines such as Family Circle and Women’s Day. It is in the events that we have held for the past 15 years, teaching the public about CDH. Rallies and bake sales. Bowl-a-thons and ATV events. Formal balls and golf tournaments. Balloon releases and candle lighting ceremonies. In the 1000’s of web sites that link to CHERUBS and CDH info. In the 1000’s of awareness items we have been offering on our web site since 1997. We advocate for awareness every single day.

In 1997, CHERUBS compiled our first Congenital Diaphragmatic Hernia Research Survey, taking data from parent membership forms and compiling studies. We did this all painstakingly by hand every year until 2000 – when our membership numbers grew so big that we didn’t have the time or the manpower to put together another survey by hand. Our studies were ordered by surgeons and researchers around the world and we have collaborated with several on their own studies. Our results have been submitted for publication to medical journals, co-signed by some of the world’s top CDH surgeons. http://cdhsupport.org/members/dload.php?action=category&cat_id=3

We take our research very seriously and do not submit haphazard statistics or information to parents without checking with medical advisors first. We do our research the hard way – in the research library, talking to researchers, spending weeks going over every number before we release it to the members and public. We do not talk abstractly of CDH research, we do not write articles about the work of others found on the internet, we do not donate $100 to a hospital and call ourselves a research organization. We do actual research. We actually contribute to the CDH research community and have done so since 1997. It has not been easy and we have lost many a sleepless night tabulating data or pouring over medical journals – but our goal has always been to help lead the way to find the cause, prevention and better treatment of CDH.

Now, we are compiling the 2008 Congenital Diaphragmatic Hernia Research Survey Results with the data of over 2500 CDH families. The CDH Study Group now holds the world’s largest database of research information on the diagnosis and immediate medical care of CDH babies. CHERUBS holds the world’s largest database of research information on the family history, neonatal care and long-term outcome of CDH babies. We have always worked together and continue to do so with several projects in the works. Our CDH Research site is under construction and will be ready by Spring, 2009. It will compile CDH research data on the fly and will be available freely to all CDH researchers, families and organizations.

And all this is not easy. CHERUBS was started by 2 CDH parents with no experience but we gained non-profit status within 8 months. We started before there was an internet and without help. We paid our dues and did the hard work and we are so proud of all we have accomplished!

CHERUBS is a charity and is run as such. It puts our cause first – helping CDH parents. We do not look at our organization in the business sense. Charities give. Businesses sell. We do not feel a need for competition or making calculated business plans to make the most money or own the rights to anything. We are not selling anything. We are giving away CDH information freely, raising awareness and offering support. Our “business” plan is created by following our hearts and consciences, not our bank account. This makes it sometimes hard to provide all the services that we would like to give – but in the long run it is what has made us successful in helping 1000’s CDH families and what makes our membership a family.

CHERUBS is still run solely by volunteers. Dawn, our President, volunteers over 40 hours every week to helping CDH families through CHERUBS – while also having a family and running a business and going back to college for medical courses. Our Advisors dedicate a minimum of 20 hours each every week as well, with several also donating over 40 hours of our time weekly. We have an extensive web site with 1000’s of pages, forums, services and 24 / 7 support to families. We have blogs to maintain, Facebook, Myspace, and many other sites we keep updated with CHERUBS and CDH news. Newsletters and research to work on, awareness events year-round, fundraisers, books and more committees than most support groups. We have get-togethers and conferences. We maintain a huge e-commerce shop offering 1000’s of CDH awareness items – all original and designed by hand by us. We also have our accounting, IRS paperwork, state paperwork and legal paperwork. All meticulously done and when we are short on funds and donations – often Dawn or one of the Advisors will personally pick up the tab to make sure that CHERUBS can continue to offer a needed service.

There is dedication and heart in CHERUBS. Everything we do, we do to help families and the CDH community as a whole. We do this with honesty, integrity and honor, making our cherubs proud. We are 1 big CDH family and we offer positive and comforting support to each other. Our focus is, and always has been, helping CDH babies and families.

CHERUBS is proud to be a member of ACDHO (The Alliance of Congenital Diaphragmatic Hernia Organizations). ACDHO was formed to build a stronger CDH community, with emphasis on working together in a professional and supportive manner, encouraging CDH Awareness and fighting against the ownership of it, increasing CDH Research and mostly to collectively offer CDH Families the most support possible.

The following organizations also honor such a high code of ethics and we are so happy that they are in existence helping in this fight against CDH:

CHERUBS

CHERUBS Australia

CHERUBS UK

CHERUBS Mexico

Rainbow of Hope

Jack Ryan Gillham Foundation

Olivia Raine Foundation

Kays Kids / Real Hope For CDH

Johns Hopkins Unnamed CDH Group

Little Lambs

En Stitching Hernia Diafragmatica (The Netherlands)

Ernia Diaframmatica Congenita gruppo di supporto (Italy)

Association Hernie Daphragmatique (France)

CDH Study Group
Boston Childrens CDH Clinic

CHERUBS has been working with many of these organizations for years and some are very new. We have also been working with all CDH clinics and fetal care centers since the first one opened it’s doors in San Francisco in the early 1990’s. Of course there are more CDH clinics and hospitals who are involved and supportive as well! And we all have 1 thing in common – the desire to help families dealing with Congenital Diaphragmatic Hernia without any competition amongst each other, any ulterior motives and the drive to see “Congenital Diaphragmatic Hernia Awareness” given back to the families and researchers.

This is what Congenital Diaphragmatic Hernia Support is all about and we are so proud to be a part of it!

On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Diaphragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008. Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening correspondence to other CDH organizations and families who used the term “Congenital Diaphragmatic Hernia Awareness”.

On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.

It is our goal, along with 7 other CDH organizations and over 4000 CDH families and medical care providers who signed an on-line petition, that this trademark be canceled so that all people affected by Congenital Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Diaphragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect. Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and persons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH families and to fight for their rights to raise awareness.

It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to cancel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organization for families affected by Congenital Diaphragmatic Hernia.

CHERUBS is extremely proud to be a member of ACDHO (Alliance of Congenital Diaphragmatic Hernia Organizations), CDH organizations and foundations working together to help families affected by Congenital Diaphragmatic Hernia.

2.
What is CDH?
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A severe and often deadly birth defect that occurs when the diaphragm fails to fully form and allows organs into the chest cavity.
* A medical disease

5.
What organs are / can be herniated in CDH?
* Diaphragm, Lungs, Stomach, Liver, Intestines, Spleen, and more
* Any organ in the body
* Diaphragm, Lungs, Stomach
6.
What are the odds of a baby having CDH?
* 1 in 2000
* 1 in 5000
* 1 in 2500